Curing the Loneliness of Illness

"Loneliness ...is the central and inevitable fact of human existence," wrote Thomas Wolfe. But the profound aloneness that often follows getting diagnosed with a serious medical illness can make this "central and inevitable fact" much worse.

That is, unless there are true companions along the journey. Consider, for example, the tragic story of Nathan and Elisa, young parents from Brooklyn NY who were diagnosed with cancer—within days of each other. Their story, however, disturbing as it is, is also strangely uplifting. As quoted in the NY Times, Nathan, says "...she's a great person to have cancer with...I wouldn't want to have cancer with anyone but her". Elisa, says "We do everything together. Having cancer together was this odd, almost fitting description of us...If you're going to be sick in bed, at least the person who is next to you is a person you enjoy being with."

In sickness and health indeed! In fact, having companionship in sickness, of all sorts in addition to the marital kind, can make all the difference when you're diagnosed with a medical illness.

Those of us who've received a scary diagnosis (e.g, potentially terminal cancer or some other illness labeled "progressive," or "incurable") know how the sense of isolation feels. Lives take a detour. We're suddenly alone, lost in our own confusion and fear. Even the presence and concern of close others or reassurances from medical professionals can't alleviate the sense that we've entered a different realm, a strange, uncharted land that sets us apart. As the world swirls around us, bustling with the mundane activities of daily living, we're seeing our future in slow motion, through a cloudy lens that detaches us from once intimate relationships and even from our former selves. Sadly, an invisible barrier arises between us and those we care about.

Not so with Elisa and Nathan. They are finding comfort as fellow travelers through an especially dark and mysterious labyrinth. Clearly, they are a close couple, and not all couples could face their challenge so positively. But what's also striking is the bond that their shared illness experience provides. They do not have to bear it alone.

Being lonely can itself be dangerous to one's health. Loneliness can double a person's chances of catching a cold and, worse, lonely people are four times more likely to have a heart attack and, once they do, four times more likely to die from it (ref. 1). Further, a 2007 study (ref. 2) showed that loneliness has an effect on the immune system: it increases genetic activity related to inflammation, a risk factor for heart disease and cancer; and it reduces antibody production and antiviral responses, protective against health risks. Such patterns of gene expression are not, according to researchers, linked to other negative feelings such as depression. Loneliness, then —all alone — is a hazard.

For the person with a medical illness, loneliness can be especially toxic and, for many, simple support from healthy others may not be enough. Cancer patients, for example, often speak about how they feel most safe, comfortable and connected when receiving their chemotherapy at a hospital infusion center. There they meet other cancer patients with whom they share similar experiences. It is a place, says one patient, where she does not have to explain how she feels, where to have lost her hair is understood, where she does not have to "act healthy" so as to not burden her family, friends and co-workers. She can share war stories about her cancer treatment that only fellow members of the cancer "club" can tolerate. She can also gain information, validation and learn additional coping skills. It may seem odd to those not in the club, but the chemotherapy center can be a place of camaraderie and even of healing; at least for this patient that is where she feels less lonely.

Many with a medical illness seek comrades on similar journeys. Psychotherapy and support groups, internet chat rooms and blogs are all ways of connecting with one's illness companions. Says one patient of his MS psychotherapy group: "they're my brethren". Despite the fact that his group is not heterogeneous (the degree of impairment ranges dramatically among members) he discovers they have a common ground — and a common enemy — uniting them. The group provides health-enhancing strength and a safe space where members can speak their fears aloud: progression, burdening others, challenging relationships, role shifts, financial and career anxieties. They bolster each other with coping tools. When one member has a relapse, they rally around their comrade and find comfort in each other.

Of course, venues such as therapy and support groups are not for everyone. Some medically ill people prefer to "be alone", and choosing to be alone is distinct from a sense of disconnection and isolation. Being alone in medical illness can provide solace, space for reflection, contemplation and self-assessment as well as a feeling of control and direction. The person who is alone — but not lonely — may find self-connection through religion, spirituality, or artistic immersion, for example. No question, these can be profoundly valuable supports. Yet, they are not necessarily antidotes to the existential loneliness that so many medically ill persons experience.

Often the remedy is finding a community where the unspoken feelings around illness not only can be spoken but are routinely given voice. My patients tell me that encountering and engaging with others who share their illness lifts the pallor of isolation, the barrier that separates the healthy from the ill. "Our lives are not tragic," says Elisa of the cancer-sharing couple. Going through any medical illness "together", with others on a similar journey, is far better than going it alone.

-----------------About the Author:Ruth Livingston, Ph.D., is the Founder and Director of LIVING WITH MEDICAL CONDITIONS, a study group and referral service affiliated with the William Alanson White Institute, and Executive Editor of the Institute's professional journal Contemporary Psychoanalysis. She holds a certificate in Bioethics and Medical Humanities from the Albert Einstein College of Medicine and Yeshiva University and is also on the faculty of Columbia University Teachers' College. Dr. Livingston maintains a private practice in New York City, in which her specialty is working with the medically ill. She writes and lectures on the subject of psychoanalytic treatment for those with acute and chronic medical conditions. Seewww.ruthlivingstonphd.com.